Following (scroll down) is a transcript from the Abundant Energy Summit’s interview with Dr. Sarah Myhill.

The Summit was held from August 24 - 31, 2015 and featured a number of speakers.

Dr. Myhill is a physician who specializes in ME and other complex illnesses. Her approach is considered "alternative," that is, it draws upon nutritional strategies, hands-on therapies, and supplementation with micronutrients, rather than relying exclusively on pharmaceuticals.

Much like Dr. Cheney, Dr. Myhill believes that mitochondrial dysfunction lies at the heart of ME/CFS. The mitochondria are the power houses of cells. Their job is to form adenosine triphosphate (ATP), the molecule that generates the energy needed for all functions - breathing, digesting, thinking, walking ... everything. When the mitochondria are inhibited from doing their job, less ATP is produced, and, as a consequence, your ability to maintain physical and mental function is reduced. (Skeletal muscle is especially affected, as the mitochondria in muscle cells are less efficient that those in organs. Typically, people with mitochondrial disease find it difficult to walk.)

ATP is composed of three parts: 1) adenine, a purine nucleobase, 2) ribose, a sugar, and 3) three phosphates connected by high energy bonds. When one of those bonds is broken by an enzyme, 7,200 calories are released. That's a lot of energy. And we need all of it. In order to simply lie in bed and breathe, an adult uses roughly 10 million ATP molecules per second.

If your mitochondria are impaired in any way, even a tiny bit, your body will find it difficult to perform even the most basic functions. You will find it difficult to digest your food (the production of stomach acid requires an enormous amount of ATP), your heart will suffer from diastolic dysfunction, which also requires a large amount of ATP, you will be unable to think clearly, you will experience muscle weakness, particularly in the legs, and you will be exhausted after the slightest effort. The more your mitochondria are impaired, the more exhausted you will be, and the less it will take to send you to bed.

Dr. Myhill's site is a goldmine of information. On it, you will find everything from alcohol intolerance to valacyclovir. I encourage you to take a look.__________________________

Niki Gratrix: Hi everyone this is Niki Gratrix and welcome to another episode of the Abundant Energy Summit. I have the pleasure today of introducing Dr. Sarah Myhill.

Dr. Myhill worked with the NHS for 20 years before entering into private practice. She was the Honorary Secretary for the British Society for Allergy and Nutritional Medicine for 17 years, and has worked with over 5,000 patients with fatigue.

She believes the central mechanism is mitochondrial dysfunction. She is the author, with colleagues, of three scientific studies in the International Journal of Clinical and Experimental Medicine showing that the level of mitochondrial dysfunction correlates with the degree of fatigue. She is also the author of the book, It’s Mitochondria Not Hypochondria.

Q: You have a car analogy in your book. Please explain that.

Myhill: Let’s start from the beginning. The first and most important thing to grasp about Chronic Fatigue Syndrome is that it is not a diagnosis, it is a clinical picture that may have many causes. It is my job as a physician to find the causes. The second important thing to grasp is that we have symptoms for a very good reason. Symptoms protect us from ourselves. If we didn’t experience fatigue we’d work all day and all night. And we’d be dead in eleven days, because nobody has survived eleven days without sleep.

The symptom of fatigue can arise for many reasons that have to do with delivery systems and energy expenditure - how we spend and create our energy. We always have to keep ourselves where our energy demands don’t exceed our energy delivery. We need to pay attention to both sides of the equation: energy demands vs energy delivery.

The body is just another machine, like a car. Like any machine it needs the right fuel in the tank. That fuel has everything to do with diet and gut function.

How do we burn our fuel to create energy? Mitochondria are essential for creating energy from fuel. They are the little engines that exist in every cell in the body, and in every cell in every living organism. Without mitochondria we wouldn’t have life as we know it.

What mitochondria do is they take fuel from the bloodstream derived from carbohydrates, fats, and proteins (in the form of acetate groups) and burn them in the presence of oxygen to produce ATP. Think of ATP as a molecule with which you can do any function in the body.

The thyroid gland is also terribly important. It determines how the fast those mitochondria go, like an accelerator pedal in a car. We have to be careful about how we spend our energy. Spend it too fast and we wouldn’t have survived a harsh winter.

What allows us to gear up energy spending is the adrenal gland, which I think of as the gear box in a car. Adrenaline is the short-term immediate hormone for energy delivery; cortisol is the intermediary and DHEA is for long-term energy delivery. Those hormones allow us to adjust energy demand to energy delivery very closely.

Of course, all cars have to be serviced regularly. We service our bodies during sleep. Every single living thing, even bacteria, need a time in which metabolic processes shut down to allow healing and repair to take place.

Those are the central, important aspects.

Q: You talk about how the immune system takes up a huge amount of energy.

Myhill: That’s on the other side of the equation, where we look at how energy is spent in the body. An astonishing amount of energy – two-thirds of all energy we generate – just goes into staying alive: basic metabolic rate, heart function, lung function, gut function, liver function, brain function. All those things demand energy. The rest we should spend physically, or mentally, in terms of mental exercise.

I think of the immune system as a brain that isn’t contained within the skull, but is spread throughout the body. It’s intelligent, it’s decision-making. It’s highly active, and it’s highly demanding of energy. It likes to run on fat, and so on. But when the immune system is activated it uses up a massive amount of energy.

How do I know that? If a normal person gets flu, they get instant ME. They’re bed-bound for a week or two until their immune system switches off and they get well again. When their immune system is activated because of infection, that’s normal, desirable, and essential to dealing with an infectious threat.

But if the immune system is activated because of allergy, that’s what I call useless inflammation. The body is spending immunological energy on something that is not a threat. That kicks an immunological hole in our energy bucket.

Q: Let’s focus a little more on the mitochondria. Would you please expand on the production of ATP?

Myhill: When ATP is being efficiently recycled, ATP forms ADP. Then it goes back into the mitochondria where it again forms ATP. That is an extraordinary efficient cycle. In fact, when we are functioning at our maximum potential, a molecule of ATP can be recycled back through our mitochondria every ten seconds. If there was no such recycling, then we would burn more than our body’s weight of ATP every day.We run into problems when energy demand exceeds energy delivery. The body has some emergency mechanisms. Let’s say I have to run for my life, all these energy systems would be employed. One of them is to switch into anaerobic metabolism that produces lactic acid. We all know about that. It’s the lactic acid burn that slows athletes down and stops them, and stops ME patients as well.

Another mechanism is when two molecules of ADP combine to form one molecule of ATP and one of AMP. The ATP can be quickly recycled, but the AMP is recycled very slowly. So suddenly, you’re pulling the plug on your supply of ATP. It’s all draining out of your system. That is what I suspect causes the delayed fatigue in ME.

Interestingly, another paper has come out recently, where they tried to reproduce that idea in a computer using low rates of metabolism and putting in all the variables. And they came up with the same conclusion.

Q: What are some of the causes of mitochondrial underfunction?

Myhill: Broadly speaking, there are two important causes. The mitochondria can be deficient in raw materials – magnesium, CoQ10, acetyl-l-carnitine, vitamin B3, and D-ribose. Those are the 5 things we see that mean the mitochondrial are deficient. We measure these things when we do mitochondrial tests.

Or, mitochondria can be going slow because they are blocked by something. Blocking factors can include environmental toxins, energy delivery blockers, heavy metals, and fermenting gut products.

You can block mitochondria by stacking things on top of the mitochondrial membrane. It’s no good making ATP if you can’t get the ATP out of the mitochondria and into the cell where it’s needed. Mitochondrial membranes are made up of proteins that act like a little shuttle that takes ATP out of the mitochondria and then brings ADP back into the mitochondria where it is turned into ATP. There are lots of things that can block that shuttle. We can do tests to determine what those blocking factors are.As an aside, I got interested in ME when I started seeing farmers with sheep dip flu. They had been poisoned by organophosphates. Organophosphates inhibit oxidative phosphorylation. That is how they block the mitochondia’s ability to make ATP.

Broadly speaking those blockers fall into two groups: they can be toxins from the outside world, such as pesticides and heavy metals, or they can be products from within the body. I suspect a major source of those is products from the fermenting gut.

Q: And inflammatory processes lead back to the gut.

Myhill: Mitochondria are important, but I spend as much time with my patients talking about diet, and talking about gut function. So many problems start with the gut.

Q: Mitochondrial malfunction explains the illness brilliantly, but it’s not the cause, it’s the effect.

Myhill: The whole thing is circular. We all come into this area with different theories, but we all end up offering similar patterns of treatment – diet, detoxing regime, nutritional supplements, correcting hormones, and so on. But mitochondria are central players.

Q: Diet, pacing, micronutrients and sleep are your four foundational things. Do you want to expand a little on that, especially pacing?

Myhill: It’s back to square one. Fatigue is a mechanism that protects us from ourselves. If someone is experiencing fatigue because they are overdoing, they are constantly stressing their mitochondria and their energy supply and they are constantly going into anaerobic metabolism and producing lactic acid.

Let’s talk about anaerobic metabolism. Normally, mitochondria function on oxygen. When you burn a molecule of sugar in the presence of oxygen, you’ll produce about 26 molecules of ATP. But when you stress your mitochondria and switch to anaerobic metabolism, burning a molecule of sugar only produces two molecules of ATP. If you do this on a regular basis you get a buildup of lactic acid.

To convert that lactic acid back to pyruvic acetate takes six molecules of ATP. What that means is if you overdo things it takes an awfully long time to get back to square one. The point of pacing is to avoid getting into anaerobic metabolism. So, pacing is crucially important. People will get better if they pace. If they don’t pace, eventually there is tissue damage and inflammation sets in, which kicks another hole in the energy bucket.

Q: You have a basic protocol for micronutrients, what is that?

Myhill: Although I began by seeing patients with ME, I have come to the conclusion that no matter what a patient comes to me for, there is a basic package of treatment that we should all be doing. In terms of diet, this consists of a “stone age diet”: meat, fish and eggs, nuts and seeds, lots of veggies, and low-fructose fruits, such as berries.

Number two is sleep. Most people are sleep deprived. If you need an alarm clock to wake up in the morning you are sleep deprived.

The third thing I talk about is micronutrients. Because modern farming depletes the soil of minerals, we should all be taking a basic package of micronutrients – vitamins, minerals, and amino acids.

Q: Talking further about the Stone Age Diet, are you recommending a grain-free diet?

Myhill: Grains are too toxic for humans to consume. So, remove all gluten completely. The fermenting gut is a very big problem.

The upper gut should be a near-sterile carnivorous digesting gut to deal with meat and fat. The lower gut, which is teeming with bacteria, digests vegetable fiber. So, the lower gut is a fermenting gut. If we overwhelm our liver with sugar, for example, we switch into the fermenting gut and have all the problems of metabolic syndrome.

What I am saying is that a modest amount of carbohydrate is fine if you’ve got perfect digestion. But my ME patients don’t have perfect digestion. So, carbohydrates are a major risk factor for chronic fatigue syndrome.

I consider being vegetarian a major risk factor for chronic fatigue syndrome for two reasons. Vegetarian foods tend to be high GI, that is, grains and fruits. They are also high in the major antigens: dairy, gluten, and yeast.

Q: Would you talk a little about B12 and magnesium?

Myhill: Magnesium is centrally important for mitochondrial function. In fact, 40% of all the energy that comes out of mitochondria simply maintains the ion pumps that kick calcium out of cells and drag magnesium in. If the mitochondria are going slow, they can’t kick the calcium out, which is toxic within cells, and they can’t drag the magnesium in. So they don’t have the magnesium they need to make the mitochondria even work. There is a vicious cycle here. If you can’t get the magnesium in, the mitochondria won’t work, and if the mitochondria can’t work, you don’t get the magnesium in.

The reason magnesium injections are so helpful is that you are spiking the level of magnesium in the blood for a short period of time. All of a sudden it’s much easier to drag the magnesium into the cells. The mitochondria then start working again properly. Magnesium injections kick start the mitochondrial engine.

With B12 I think there may be a similar mechanism going. The thing about B12 is that it is very poorly absorbed. Even people with the best gut function will only absorb 1% of the B12 that they are taking. Only about another 1% actually gets into the brain, where it is very important for cognitive function.

The point about B12 is that if you inject it, you spike the levels in the blood, and you get the B12 into the brain. I’m only hypothesizing, because so many of my ME patients find their brain function and their mood is so greatly improved with B12 injections. B12 is performance enhancing in athletes, and even in horses. Trainers give horses B12 injections, and they go faster. That means their mitochondria are working better. And, B12 injections are an incredibly safe thing to do.

Q: Are you having much luck with transdermal forms?Myhill: Transdermal forms of B12 are better than oral forms. They get about 6% absorption. But again, it’s not as good as the injection because you don’t spike blood levels.

Q: You mentioned the mitochondrial cocktail?

Myhill: When we do tests, we tailor treatments to individuals because we measure CoQ10, carnitine, B12, magnesium, and ATP. But if you can’t access those tests, you can do no harm by taking those supplements.

I have yet to find an ME patient with normal levels of CoQ10. These days I tend to use ubiquinol, which gets much better blood levels. 200 mg of ubiquinol will correct all my patients.

Q: Diet and environment need to be under control for any of this to work.

Myhill: That’s very important. We are living in an age in which we are being overwhelmed with toxins. A supplement I routinely prescribe for my ME patients is glutathione, which is essential for getting rid of heavy metals and is a potent antioxidant. With 250 mg a day of glutathione you can do no harm.

Another interesting facet of mitochondria is that they determine aging. We age at the rate that our mitochondria age.

Q: There have to be different approaches for different people. Some may need thyroid support, some adrenal support.

Myhill: I always say that getting people well from chronic fatigue syndrome or ME is like a jigsaw puzzle. You’ve got to have all the pieces in place at the same time. You can’t try one thing, and when it doesn’t work, you try another. You’ve got to start with the foundation stones of pacing, diet, supplements, sleep. Then you build on that with the mitochondrial stuff, thyroid stuff, adrenal stuff, gut fermentation stuff. You can do a lot of this yourself with simple nutritional therapy. It’s very doable.

Q: What about tests?

Myhill: The tests we use are all documented research tests. We apply them clinically. The problem with new, innovative tests is that they are hideously expensive. But don’t wait for the tests to come out to start to get better. Put the basic package in place as well as you possibly can. It’s all about tipping points.

I say to my patients, all we have to do is get you 51% better and your body will do the rest.

Dr. Martin Lerner has been a long-time proponent of antiviral therapies for treating ME/CFS. His background as an infectious disease specialist naturally led him to explore antimicrobials because he believes that microbial infections lie at the heart of ME/CFS symptomatology. He has authored numerous papers on antiviral treatments for ME/CFS, and has treated patients for decades.

Below is his guide to treating patients with ME/CFS using antimicrobial agents. He also includes the roster of tests he uses for diagnosis, and a section on patient care.

Dr. Lerner makes the disclaimer that his guide has not been peer-reviewed, but that does not make it any less valid. The guide is a summary of decades of clinical experience and, as such, stands on its own.

DISCLAIMER: The information contained in this document is meant for informational purposes only. The management of ME/CFS in any given patient must be approached on an individual basis using an Infectious Diseases’ specialist’s best judgment. This document is a culmination of over 20 years of ME/CFS practice and peer reviewed articles. This document is not a peer reviewed publication.

Energy Index Point Score® assessing physical functional capacity in activities of daily life documenting limitations. The EIPS® system defines the severity of patient fatigue, 0-10, through measurement of real-life situations including one’s ability to sit, stand, be out of bed, work, perform housework, socialize, exercise. The EIPS® level is determined through discussion between the physician and patient. A change in EIPS® level of one is a significant change in health and lifestyle for the patient, as ME/CFS symptoms decrease when the EIPS® increases.Cardiac testing:

Note Lyme and Lyme co-infections can be elusive. Lyme disease can present clinically as ME/CFS. A significant portion of Lyme disease cases have negative Lyme serologic tests. We prefer Lab Corp for Lyme testing and use all 4 tests. The antigens used are those used by the CDC. An appropriate rural exposure, a tick bite, a bull’s eye rash, can all add to the likelihood of Lyme disease. Due to the need for both clinical and diagnostic evaluation in Lyme disease, it is recommended to consider an Equivocal (not negative or positive) lab result, as positive and begin Lyme treatment.

The Energy Index Point Score (EIPS) chart provides the severity of patient fatigue. A change in EIPS level of one is a large significant change. The EIPS level is determined by agreement of physician and patient with the EIPS chart easily available for viewing at out-patient visits. As the EIPS level increases, CFS symptoms lessen and disappear.

How to use the EIPS system in four easy steps:

1) Post the EIPS chart in examining room

2) Ask patient to evaluate their level of activity based upon the prior two weeks

3) Question the patient’s EIPS evaluation4) Record and track the EIPS level. Report every 6-12 weeks.*

* The EIPS is not assessed if the patient has an intercurrent infection (respiratory, gastroenteral, ...). At the same visit the following 4 symptoms are regularly categorized: 1) chest pain 2) palpitations 3) muscle aches 4) lightheadedness - noting whether absent or present. If present, when (beginning or end of day, how frequent), where, severity, etc. All of these factors are included in the EIPS assessment.

Antiviral Treatment of EBV

General Information

A diagnosis of Epstein-Barr virus(EBV) infection is made with a positive EBV EA antibody diffuse and/or a positive VCA IgM antibody.

Treatment

Valacyclovir (Valtrex) is remarkably effective and safe. The one concern is that valacyclovir is excreted by the glomerulus and secreted by the tubules and can cause acyclovir stones and obstructive uropathy. This will not occur if the patient drinks at least six 8-ounce glasses of water daily. Occasionally diarrhea may be caused by the valacyclovir. If the patient weighs 70 kg, the dosage is 1 gram four times daily, ideally every six hours; however safe to take four hours after the last dosage (it is not necessary to awake in the middle of the night for a dose). It is important that the patient take four doses for treatment. A higher dose of Valtrex may be necessary with patients who weigh more than 175 pounds and this must be done carefully. A patient who weighs more than 175 pounds may require 1.5 grams of Valtrex, valacyclovir four times daily. Please note valacyclovir is now available in generic form. While I have not had experience with all distributors of generic forms yet, I have had patients move to the generic form of valacyclovir by Teva and Mylan with no issue.

Famvir at the same dosage can be substituted and although there is not the strong evidence that we have for valacyclovir, it likely is equally effective. One does not have the worries concerning renal calculi with Famvir and it has also been extraordinarily safe. It does not cause diarrhea.

An initial worsening of symptoms with normal laboratory at a two-week special visit with worsening symptoms is a Jarisch Herxheimer reaction and predicts a good response. Initial benefit is usually not noted for the first six weeks’ of therapy and then occurs thereafter. A minimum period of therapy is one year. Usually benefit is not apparent until after 3.5 months of therapy.

We have not seen thrombocytopenia with Valtrex, valacyclovir. However, an elevated mean corpuscular volume is seen. This is not a toxicity, and does not require one to stop medicines.

Antiviral Treatment of HCMV & HHV6

General Information

A diagnosis of cytomegalovirus(CMV) infection is made with an elevated CMV IgG titer. The IgM titer for CMV is inaccurate and insensitive. The higher the CMV IgG titer, the greater the viral load. Human herpes virus 6 infection is made with an elevated titer at least twice normal. The diagnosis of EBV, CMV, or HHV6 ME/CFS meets the Canadian consensus and Fukuda CFS criteria.

Treatment

The usual treatment for either/both is valganciclovir (Valcyte) one 450-mg capsule daily for three days, followed by two 450-mg capsules in the morning daily. Liver function tests are studied very carefully. If there is any abnormality, one alters the dosage. Given the patient’s ability to safely tolerate two 450-mg capsules, dosing can be increased to two, 450-mg capsules in the morning and a one additional 450-mg capsule twelve hours later. Liver function tests, again, must be studied carefully and frequently.

Both valacyclovir and valganciclovir are absorbed with a 20% increment if there is food in the stomach. The most common side effect of valganciclovir is hepatotoxicity. If this occurs, the drug is stopped, the dosage is decreased, and is again restarted. When monitoring reveals AST and ALT are normal, the monitoring can continue every four to six weeks, but more frequent with hepatotoxicity. The rule is no valganciclovir at all if there is any abnormality in liver function.

The duration of valganciclovir and therapy for CMV and/or HHV6 is aimed at one year to start with no improvement expected for the first four to six months. It is a general rule that the shorter the duration of ME/CFS, and the earlier appropriate therapy is started, the earlier recovery will occur. Recovery is a continuing, gradual process.

We have not seen thrombocytopenia with Valcyte, valganciclovir. An elevated mean corpuscular volume is seen. This is not a toxicity to stop medicines.

Antibiotic Treatment of Co-infections

BackgroundIf the diagnosis of ME/CFS is made by the accepted criteria and there is no coinfection, one begins antiviral therapy promptly. However, if there is coinfection with a diagnosis of Lyme disease, Babesiosis, Ehrlichiosis, Mycoplasma pneumoniae, or adult rheumatic fever, these conditions are addressed first. After these conditions are addressed, ME/CFS is treated with antiviral therapy. Should one or more of these co-infections occur mid- antiviral treatment, do not stop but treat in parallel.

Treatment of Lyme DiseaseThe protocol for Lyme disease, serologically positive or epidemiologically positive and serologically negative, that I use is a six-week’s course of intravenous therapy. Ceftriaxone is preferred. If there is a history of allergy to penicillins and it is not an immediate allergy, I routinely refer the patient to an allergist for cephalosporin testing. Under ordinary circumstances if this is negative, ceftriaxone is given; depending on the size of the individual 1-1.5 grams intravenously every 12 hours. The patient is seen weekly. They are asked not to travel further than 45 minutes from this office, because a PICC lines has been placed and infection of the PICC line site or side effects to the cephalosporin can occur; particularly biliary dyskinesia or abnormal liver function tests with ceftriaxone. Cefotaxime may be substituted for ceftriaxone in the case of biliary dyskinesia. If there is biliary dyskinesia, Unasyn, or ertapenem may be used. If diagnosis of Lyme occurs after antiviral treatment has commenced, and patient shows liver sensitivities with Valcyte dosing, Unasyn is recommended. Unasyn is given 2 grams IV piggyback every 12 hours. Ertapenem is given 2 grams IV piggyback every 24 hours. The same dosage of cefotaxime (as ceftriaxone) of 1-1.5 grams is used, but the administration of cefotaxime IV is every 8 hours, rather than every 12 hours, for ceftriaxone. Cefotaxime has no hepatotoxicity. Cefotaxime is excreted by the kidneys.

The goal of Lyme therapy, of course, is a well patient, but particularly a negative serology. Oral suppressive therapy is continued for at least three months or until the Lyme serology is negative. Typical medicines used for Lyme suppression after the original six weeks are amoxicillin; in a 70-kg individual 750 mg before every meal and at bedtime. Doxycycline 100-150 mg twice daily after meals and with a full glass of water may be given in the place of amoxicillin for suppression.

Treatment of Mycoplasma Pneumonia

We use LabCorp less than 300 as a normal level. The patient is not considered to have persistent Mycoplasma pneumoniae infection unless the initial titer is 600 or more. Mycoplasma pneumoniae is treated intravenously with doxycycline 150 mg IV piggyback for six weeks followed by oral suppression with doxycycline 100-150 mg twice daily or moxifloxacin 400 mg once daily for three months. The goal of this therapy is a serum level which is less than twice the normal. The duration of time again is six weeks intravenously plus a minimum of three months oral suppression.

Treatment of Adult Rheumatic Fever

The diagnosis of adult rheumatic fever is made with an ASO titer of over 400. Echocardiograms are done in all patients with ME/CFS originally and any changes in the mitral valve, either thickening or mitral valve prolapse are additional supports for the diagnosis of adult rheumatic fever. A patient who meets the criteria for ME/CFS with an ASO titer of 400 or more is considered to have adult rheumatic fever and treated accordingly.

Chest pain, joint pain, rash, life-altering fatigue are all common to ME/CFS and adult rheumatic fever. Patients are diagnosed with adult rheumatic fever with the following criteria:

If there are symptoms of sinus disease, a CT of the sinuses is done to make certain there is no obstructive sinusitis which may need sinus surgery.

Patients are treated with intravenous Unasyn 3grams IV piggyback every 12 hours for 4-6 weeks, followed by 2.4 million units IM (1.2 million units each hip every 30 days) until ASO titer is ≤200.

Patient ManagementPatient Visits and Testing

Check-ups with labwork should occur every 6 weeks in-person.

Diet and Exercise

A healthy, well balanced diet is a must. Minimize sugar intake. Minimize caffeine intake. Absolutely no alcohol allowed, as it may be a cardiac toxin for ME/CFS patients.

No physical exertion or exercise until above a 7 Energy Index Point Score. Stretching regularly is recommended. Once the EIPS is 7, modest exercise can and should begin. The ultimate test is - Are you tired the next day after exercise? If you are, then the exercise that you have done is too much. Start out very slow. Just a few minutes, allowing for breaks and recovery time.

Lifestyle

10-12+ hours of sleep per day and daily naps until the EIPS is at least a 6. Avoid germs (think airplanes, libraries, churches). Stretch daily, minimize exertion, seek assistance with housework/chores/errands. Keep feet elevated, promote a network for assistance and ask for help.

Daily energy envelope management is a must. Do not push until a crash. This is not productive. As much as possible, do not allow yourself to get overly tired. Healing is a slow process.

•A US patent (CFS LLC and The Ohio State University) is underway to be filed, February 2012, describing serum antibody to molecular markers EBV EA(D), EBV dUTPase and EBV DNA polymerase for diagnoses of EBV subset ME/CFS.

EIPS® and Energy Index Point Score ® are trademarks of the Dr. A. Martin Lerner CFS Treatment Center. All rights reserved. This document may be copied for use by physicians and patients, but may not be modified, sold, or distributed promotionally in any form without express written permission.

In the 1990s, Dr. Cheney proposed the idea of cool-water hydrotherapy for ME/CFS patients. The idea behind the treatment was that vertical immersion in cool (not cold) water would help down-regulate immune system activation, which Dr. Cheney believed was an integral part of ME/CFS symptoms.

Allergies, flu-like symptoms, and food sensitivities are all signs of immune activation, as are autoimmune comorbidities (e.g. Hashimoto's disease). Because I had all of these, as well as heat intolerance, I decided to put Dr. Cheney's theories to the test. I immersed myself in cool water (see photo), twice a day for roughly 15 minutes. The water was too cool to simply stand, so I swam very slowly using a modified breaststroke - head above water, body at roughly a 45-degree angle - for about 15 minutes.

The first thing I noticed was that my head cleared. All my cognitive problems disappeared for a few hours after getting out of the lake. My energy levels also improved, as did my stamina.

It turned out that there was more to Dr. Cheney's theory than lymph fluid reversal. Immersion in cool water shunts blood to vital organs - specifically to the heart and brain. (Heat has the reverse effect.) Swimming in cool water for a short period of time helped clear my head simply because my brain was getting more blood, and, as a consequence, more oxygen.

For those who are interested, I have pasted Dr. Cheney's original hydrotherapy program below. While Dr. Cheney recommended working up to an hour or more, I found that 10-30 minutes was more than sufficient.___________________

CHRONIC FATIGUE SYNDROME TREATMENT PROGRAM USING HYDROTHERAPY

Introduction

Patients with Chronic Fatigue Syndrome (CFS) have evidence of immune activation. Many of the symptoms associated with CFS may in fact be the result of or indirectly related to an overactive immune response. A substantial reduction in these symptoms may therefore occur with the down-regulation or re-regulation of this overactive immune system.

There are two methods of interest to us which are both inexpensive and have low side effects which can conceivably provoke immune down-regulation in CFS. A low temperature method and perhaps the more powerful pressure gradient method used to accelerate lymphatic flow. These methods could obviously be merged.

Clinicians in Germany have recently used low temperature water baths to treat both Multiple Sclerosis (MS) and Chronic Fatigue Syndrome both of which have evidence of immune activation. It has been observed that Multiple Sclerosis patients worsen when they are overheated by vigorous exercise or after Jacuzzi hot water bathing. MS patients, however, seem to do better after swimming, perhaps because there is much less overheating during this type of exercise.

Several CFS patients treated at The Cheney Clinic using the German cold-water treatment method have reported "windows" or short time periods of improvement following this treatment. As in MS, it has been observed that CFS patients also worsen after being overheated, whether by exercise or by hot water bathing. The two disorders are, of course, immunologically similar in terms of immune activation.

With respect to pressure gradient therapy, there have been two double blind placebo controlled trials documenting at least partial efficacy in CFS of IV gammaglobulin infusion at high dose.

Gammaglobulin is an immune modulator and in addition to being a source of antibodies, possesses a number of immunomodulatory proteins which are known to down-regulate or re-regulate immune system function.

Tissue lymph fluid bears some resemblance to gammaglobulin as it also contains antibodies and immunomodulatory proteins. The tissue lymph in Chronic Fatigue Syndrome patients is likely to contain immune activation proteins or cytokines in excess. Given evidence in CFS of lymphadenitis and tenderness along lymph node channels, especially in the lower left base of the neck, it is likely that there is increased production of tissue lymph related to their immune activation state.

This excess lymph flow would be expected to back up from the thoracic duct and provoke tenderness in the Virchow's node area above the left clavicle and extend up into the left middle and posterior cervical node chains and/or into the left axillary (armpit) node chain. In our experience, this is exactly what is seen in most cases of Chronic Fatigue Syndrome. Lymphatic congestion could provoke pain in the left shoulder, left arm and down into the anterior chest. Severe lymphatic congestion would produce tissue edema or fluid retention and perhaps more extensive pain and gastrointestinal complaints, all common in CFS.

Vertical immersion in water creates a significant pressure gradient which can enhance lymphatic flow up the body and torso and into the thoracic duct which lies below the left clavicle The pressure gradient effects would act to autotransfuse tissue lymph back into the blood stream at the level of the left subclavian vein.

This autotransfusion of excess immunoreactive lymph fluid would likely provoke a down-regulatory immune response which with time could result in a significant improvement in symptoms. Factors which may enhance this lymphatic flow and its effects include water temperature, length of vertical immersion, and the number of days per week in which therapy takes place.

Temperature may be a particularly important variable. Lower temperatures may be better as noted above by the Germans; however, low temperatures may also mitigate against prolonged immersion since as the patient's body cools down, a greater proportion of their energy will be shifted to maintain body temperature, and they then may become more fatigued. On the other hand, higher temperatures accelerate immune activation states and may be counter productive.

It is likely that a temperature somewhere between 80 and 86° is the best compromise between these two issues. It is also felt that length of time per session may be important. At least an hour to an hour and a half per session will likely be required to provoke sufficient lymphatic flow in most patients. The number of sessions per week could also be important and from preliminary studies, it would appear that a minimum of three sessions per week will be necessary.

Factors which may inhibit improvement include lymphatic blockage especially at the Virchow's node area which would be suggested by discomfort in that area following total body immersion. It is also possible that sicker patients may lack sufficient ability to down-regulate against tissue lymph, and, therefore, no significant improvement will be seen. There is also an outside chance that in some patients this therapy could actually exacerbate their condition in the early stages of therapy since the tissue lymph is rich in immune augmenting cytokines.

Finally, it is possible that good hydration will also aid tissue lymph flow, and we would recommend that patients on this protocol drink at least eight glasses of water per day and that sicker patients even consider an infusion of a full liter of IV fluids prior to immersion.

Instructions: Sixteen Week Treatment Protocol

It is important that the pool have water temperatures between 80° and 86°.Patients will float and occasionally "water walk" primarily in the deep end of the pool and are encouraged to socialize while in the water. Water resistant, head-mounted tape or radio players to listen to audio tapes of books, music or radio can be used to help pass the time. Patients must remain as vertical as possible and submerged to the neck while in the water. The ideal time each patient should stay in the water and the ideal number of sessions per week may vary from individual to individual.

The Cheney Clinic recommends that patients attempt to reach a minimum immersion time of one hour per session for three sessions per week. Longer times per session or more sessions per week may be helpful for some and not for others. Each person will need to determine what is ideal for them. Please note that "water walking" or water exercising is not necessary and can be detrimental in the early phases of treatment. With time, however, water walking may be the ideal exercise for CFS patients. Remember that 30 minutes of water walking is equal to two hours of land walking. CFS patients should be very cautious about overextending in the pool.

Most patients report at first feeling more fatigued or tired after their Hydrotherapy sessions. With time, however, they will typically better tolerate the sessions.

The length of time spent in the water should be increased gradually over the first three weeks starting at 15 minutes per session at a frequency of three times per week. Add 5 to 10 minutes to each successive session over the first three weeks. Never jump ahead to longer times as this has provoked worsening of symptoms in some patients. Session length may need to be abbreviated if you are feeling worse over time and sessions should be omitted on a down-day or if you have a fever above 100 degrees. No session should extend beyond one and one-half hours and a session should be cut short if you become cold or shiver.

Patients will take care to drink at least eight, 8-ounce glasses of water or juice per day. They are particularly encouraged to drink at least twelve ounces of water or non-citrus juice up to but not beyond one hour prior to water immersion. Non-citrus juices include apple, pineapple, papaya and cranberry juices.

Care must be taken to not use hot water showers before or after immersion. This could activate the immune system, especially after immersion. Prior to and following immersion a warm but comfortable shower should be taken. A warm but comfortable then five minutes of cool but comfortable shower method should be used at all other times. No hot water Jacuzzis, saunas, or hot water bathing should be used during this program nor at any other time by CFS patients.

Patients who are cold intolerant or get too cold in the pool should invest in a wet suit. We recommend the O'Neil, full or partial length wet suit as it is relatively easy to get into and out of and can be worn to the pool. Torso thickness should be a three and limb thickness a two. (ie. a 3/2 thickness wet suit). A wet suit can greatly increase the comfort level of longer times in the pool. A wet suit will also increase buoyancy.

Patients who are improving on this therapy must guard against physical, emotional, or cognitive overextension. Patients remain brittle for some time and subject to relapse even as they improve on Hydrotherapy. What you chose to do with your improved functional status may well dictate how successful this program will be for you.

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About me:I'm a 25-year veteran of CFIDS. I know what it is like to be bedbound for long stretches of time. I also know what it is like to recover, and to relapse. But this blog is not about my personal experience. It is intended to be a resource - a collection of anything that might be helpful to the CFIDS community: book reviews, advice, CFIDS news, research, advocacy, opinion, who's who in our community, fundraising... and occasionally a bit of humor.

Disclaimer: I am not a doctor, which means nothing I write, no matter how sensible it may be, should be interpreted as medical advice.